MORE than £10,000 has been raised in just five days for a baby boy who is terminally ill.

Jackson Garwood’s devastated parents were told their one-yearold son will not live long past his second birthday by doctors at Great Ormond Street Hospital.

The tot was diagnosed with infantile Krabbe’s disease, a degenerative disorder of the nervous system that has seen all his baby milestones go into reverse.

His mum, Rebecca, 31, and father Darren, 33, have been left devastated and determined to make the most of the time they have left with their precious son.

Jackson’s aunt, Jo McNeilly, 35, from Elizabeth Drive, Wickford, helped launch a Just Giving and Facebook fundraiser to help make the time her nephew has left as wonderful as possible.

She said: “My sister Rebecca knew as a mum that something wasn’t right. She took Jackson to her GP, but the doctor just said it was low muscle tone.

Rebecca didn’t think it was going to rectify itself so she took him to Basildon Hospital A&E two weeks ago and they referred him straight to Great Ormond Street.

“He was there four days and they did all sorts of tests.

Rebecca and my brother-in-law Darren were given the awful news and that there was no cure and no treatment for Jackson.

The consultant said it was so rare it was only the third case she had seen in all her career.”

The heartbroken couple were told they both carried the gene for the condition that had been passed on to Jackson.

Mrs McNeilly added: “He had started sitting up, but then he started losing his core strength and he’s lost support at the back of his neck. He will lose control of his breathing. He has just two ways of communicating, crying and laughing so we want to raise enough to keep him smiling for the time he has left. That’s why we’ve called the Facebook page Jackson’s Smile.”

The money will be used to install a sensory room and Jackson’s home in Apple Tree Way, Wickford. The family’s shower room will also be altered to include a bath to give Jackson some water therapy.

Mrs McNeilly said: “The money will allow them to spend time together and do things like taking Jackson to an aquarium and having fun so they can build a many memories as they can.

“They have started boxing his toys up because he can’t play with them any more, but a sensory room with lights will help replace them. I can’t believe we have raised so much so quickly.

We’ve had hundreds of likes.

The response has been amazing.”

To help, visit https:// crowdfunding.justgiving.com/ jo-mcneilly or visit Jackson’s Smile on Facebook Essex Bootcamp is donating all the money from a Billericay half day boot camp to the Jackson's Smile appeal on Sunday, October 25 from 9am to 1pm.

It costs £5 to take part and details will be on the Essex Boot Camp Facebook page.

 

What is Krabbe's disease?

KRABBE’S disease is a rare and usually deadly disorder of the nervous system.

It is an inherited genetic disease where people are not able to create enough of a substance called galactosylceramidase, which is needed to make myelin. Myelin is a material your body uses to surround and protect nerve fibers. Without this protection, cells in the brain die, and the nerves in the brain and other parts of the body do not work properly.

Krabbe’s disease is seen mostly in infants, but it can also develop later in life. There is no cure, and most infants with this disease will die before age two.

Symptoms include feeding problems, fevers, vomiting, loss of head control, irritability and excessive crying, poor coordination of movement or stiffness, severe seizures, spasms or jerking of the arms and legs, changes in muscle tone, deterioration of mental and motor function, deafness and blindness.